First of all, let’s look at her condition, which according to Wikipedia (that wealth of all knowledge that you still can’t use as an official source on research) can be called by any one of several names: myalgic encephalomyelitis (as Jennifer calls in the video), chronic fatigue syndrome (which is what I know it as), systemic exertion intolerance disease, post-viral fatigue syndrome, chronic fatigue immune dysfunction syndrome… just to name a few. I think that says a lot right there. They can’t even come to a consensus on what to call this disease, much less a treatment! CDC says that that is a diagnosis of exclusion and must present as follows: “The individual has had severe chronic fatigue for 6 or more consecutive months and the fatigue is not due to ongoing exertion or other medical conditions associated with fatigue (these other conditions need to be ruled out by a doctor after diagnostic tests have been conducted).The fatigue significantly interferes with daily activities and work. The individual concurrently has 4 or more of the following 8 symptoms: post-exertion malaise lasting more than 24 hours; unrefreshing sleep; significant impairment of short-term memory or concentration; muscle pain; pain in the joints without swelling or redness; headaches of a new type, pattern, or severity; tender lymph nodes in the neck or armpit; a sore throat that is frequent or recurring…. These symptoms should have persisted or recurred during 6 or more consecutive months of illness, and they cannot have first appeared before the fatigue.” You have to be miserable like this for SIX MONTHS STRAIGHT before you can prove you have his condition. I’m sorry, but what in the world?! My husband was ill with a mystery illness for 8 months of last year and those months were torturous for not only him, but me too watching him suffer and not being able to do a thing.
Let’s jump to Jennifer’s final comments:
“We need to think in more nuanced ways about women’s health. Our immune systems are just as much a battleground for equality as the rest of our bodies. We need to listen to patients’ stories, and we need to be willing to say, “I don’t know.” “I don’t know” is a beautiful thing. “I don’t know” is where discovery starts. And if we can do that, if we can approach the great vastness of all that we do not know, and then, rather than fear uncertainty, maybe we can greet it with a sense of wonder.”
There’s a lot to unpack there.
The requirements to get this diagnosis are as close to 21st century torture as I can think of. Just listening to Jennifer’s story, these folk are definitely not treated equally as other ill folk in the medical community. “It’s all in your head.” I also find it telling that these and other autoimmune diseases that cause disability are more rampant in women, so women are at a higher risk of being required to go through said torture. Although I will say that of the 3 people I can remember coming through my case load with this diagnosis, 2 of them were male!
Then the second piece. I feel like many medical professionals feel the pressure to have all the answers. If there’s anything I learned in PT school, it’s that I know next to nothing. And you know what, not only am I ok with that, I think that drives some of my professional fervor– to keep learning and exploring all the wonderful things I know I don’t know about the human body. “I praise You because I am fearfully and wonderfully made.” (Psalm 139:14) I honestly do feel awe at the construction of the human body and how it works. I wish others also felt this way. I think if more people didn’t have that squished out of them along the way, we would be more likely to explore the possibilities for things that make us say, “Huh, I don’t know” like this disease… whatever you want to call it. One of my personal rules is to not point out problems unless I have a solution at hand. I’m breaking my own rule here… I don’t know the solution. I don’t know.
Watch that video again. I bet you could learn something else on the second time through.